Morals, morale and motivations in data fabrication: Medical research fieldworkers views and practices in two Sub-Saharan African contexts

AbstractData fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin – scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive.We argue that such accounts contain limitations in overlooking data collected in ‘the field’, in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnographies, conducted in 2004–2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers' accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a ‘tool’ for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socio-economic conditions.We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication

Revelation or confirmation? The ‘fake probe’ in global health

Fakes have become a matter of concern across global health. Commissioning inquiry into presumed fake practices in global health requires both a pre-existing sense of what would constitute real provision and a suspicion that it is not being offered. In this Position Piece, we analyse the research methods being used to identify and reveal other—presumed—fakes in global health provision. We put forward the concept of the ‘second-order fake’—the fake that is used to reveal a fake—to draw attention to the methodological politics at stake in the use of the fake. By reviewing historical cases of the creation of methods of deception, we analyse the assumptions they bring into global health from other disciplines. We foreground the promises of revelation that are embedded in probes that rely on fakes to uncover fakes. We suggest that despite the growing prevalence of methods which themselves deploy fakes to find fakes, these techniques bring us no closer to understanding the lived ambiguities of everyday practices of fakery

Misdirection – Magic, Psychology and its application

The art of magic relies on deception and illusions to create human experiences that appear impossible. Misdirection lies at the heart of this deceptive art, and yet there is little consensus as to what this concept aims to describe. The concept of misdirection is not limited to magic, and its principles are applied to wide aspects of our lives (e.g., politics, public health, marketing). In recent years, scientists have started to examine the psychological mechanisms that underpin misdirection and new theoretical frameworks have been developed to help understand the concept itself. This paper provides two different perspectives on misdirection. In the first section we will discuss its use in magic and examine some of the key features involved in using misdirection to create magical illusions. This section will examine some common misconceptions of misdirection. The second section will provide a psychological perspective that discusses the key psychological mechanisms that are involved in misdirection (perception, memory, reasoning). The third section examines the uses of misdirection in other domains. This paper aims to provide a clearer understanding of how misdirection is used in magic which can serve as the basis for its use in other domains, such as public health

"You have to keep fighting": maintaining healthcare services and professionalism on the frontline of austerity in Greece.

BACKGROUND: Greece has been severely affected by the 2008 global economic crisis and its health system was, and still is, among the national institutions most shaped by its effects. METHODS: In 2014, this qualitative study examined these changes through in-depth interviews with 22 frontline healthcare professionals in five different locations in mainland Greece. These interviews with nurses, doctors and pharmacists explored perceptions of austerity and how ideas of professionalism were challenged and revised by these measures. RESULTS: Participants reported working conditions characterised by dramatic increases in public hospital admissions alongside decreases in personnel, consumables, materials, and also many hospital closures. Many drew on analogies of war and fighting to describe the effects of healthcare reforms on their working lives and professional conduct. Despite accounts of deteriorating conditions and numerous challenges, healthcare professionals presented themselves as making every effort to meet patients' needs, while battling to resist guidelines which they perceived diminished their roles to production-line operatives. CONCLUSIONS: Participants considered it their duty to defend their professional ethos and serve patients without compromising standards, even if this meant liberal interpretation and implementation of regulations. These professionals regarded themselves on the frontline of healthcare provision but also the frontline defence in a war on their professional standards from austerity

Misdirection in Global Health Creating the Illusion of (Im)possible Alternatives in Global Health Research and Practice

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Invisibility in global health: a case for disturbing bioethical frameworks

In recent years, the global health community has been increasingly reporting the problem of ‘invisibility’ as aspects of health and wellbeing that are often overlooked and ignored, and predominantly affects the most marginalized and precarious people. However, it is unclear how to realistically manage global health invisibility and move forward. In this letter, we reflect on several case studies of invisibility experienced by people in Brazil, Malaysia, West Africa and other transnational contexts. Highlighting the complex nature of invisibility and its interconnectedness with social, political and economic issues and trends, we argue that while local and targeted interventions might provide relief and comfort locally, they will not be able to solve the underlying causes of invisibility. Moving forward, we argue that in dealing with an intersectional issue such as invisibility, twenty-first century global health bioethics could pursue a more ‘disturbing’ framework, challenging the narrow comforting solutions and sociomaterial inequalities of the sociopolitical status quo. We highlight that comforting and disturbing bioethical frameworks should not be considered as opposing sides, but as two approaches working in tandem in order to achieve the internationally set global health milestones of providing better health and wellbeing for everyone. In doing so, we call for taking seriously insights from sociology, anthropology, postcolonial studies, history, feminist studies and other styles of critical reasoning that have long been disturbing the grand assumptions about people and their conditions, and, practically, to rediscover the ethos of the WHO Alma Ata Declaration, calling for cooperation and support beyond the narrow market logic that dominates the landscape of contemporary global health

A graphic elicitation technique to represent patient rights.

BACKGROUND: A patient charter is an explicit declaration of the rights of patients within a particular health care setting. In early 2020 the Save the Children Emergency Health Unit deployed to Cox's Bazar Bangladesh to support the establishment of a severe acute respiratory infection isolation and treatment centre as part of the COVID-19 response. We developed a charter of patient rights and had it translated into Bangla and Burmese; however, the charter remained inaccessible to Rohingya and members of the host community with low literacy. METHODS: To both visualise and contextualise the patient charter we undertook a graphic elicitation method involving both the Rohingya and host communities. We carried out two focus group discussions during which we discussed the charter and agreed how best to illustrate the individual rights contained therein. RESULTS: Logistical constraints and infection prevention and control procedures limited our ability to follow up with the original focus group participants and to engage in back-translation as we had planned; however, we were able to elicit rich descriptions of each right. Reflecting on our method we were able to identify several key learnings relating to: 1) our technique for eliciting feedback on the charter verbatim versus a broader discussion of concepts referenced within each right, 2) our decision to include both men and women in the same focus group, 3) our decision to ask focus group participants to describe specific features of each illustration and how this benefited the inclusivity of our illustrations, and 4) the potential of the focus groups to act as a means to introduce the charter to communities. CONCLUSIONS: Though executing our method was operationally challenging we were able to create culturally appropriate illustrations to accompany our patient charter. In contexts of limited literacy it is possible to enable access to critical clinical governance and accountability tools

'Rumours' and clinical trials: a retrospective examination of a paediatric malnutrition study in Zambia, southern Africa

BACKGROUND: Many public health researchers conducting studies in resource-constrained settings have experienced negative 'rumours' about their work; in some cases they have been reported to create serious challenges and derail studies. However, what may appear superficially as 'gossip' or 'rumours' can also be regarded and understood as metaphors which represent local concerns. For researchers unaccustomed to having concerns expressed from participants in this manner, possible reactions can be to be unduly perturbed or conversely dismissive.This paper represents a retrospective examination of a malnutrition study conducted by an international team of researchers in Zambia, Southern Africa. The fears of mothers whose children were involved in the study and some of the concerns which were expressed as rumours are also presented. This paper argues that there is an underlying logic to these anxieties and to dismiss them simply as 'rumours' or 'gossip' would be to overlook the historic and socio-economic factors which have contributed to their production. METHODS: Qualitative interviews were conducted with the mothers whose children were involved in the study and with the research nurses. Twenty five face-to-face interviews and 2 focus group discussions (FGDs) were conducted with mothers. In addition, face-to-face interviews were conducted with research nurses participating in the trial. RESULTS: A prominent anxiety expressed as rumours by the mothers whose children were involved in the study was that recruitment into the trial was an indicator that the child was HIV-infected. Other anxieties included that the trial was a disguise for witchcraft or Satanism and that the children's body parts would be removed and sold. In addition, the liquid, milk-based food given to the children to improve their nutrition was suspected of being insufficiently nutritious, thus worsening their condition.The form which these anxieties took, such as rumours related to the stealing of body parts and other anxieties about a stigmatised condition, provide an insight into the historical, socio-economic and cultural influences in such settings. CONCLUSIONS: Employing strategies to understand local concerns should accompany research aims to achieve optimal success. The concerns raised by the participants we interviewed are not unique to this study. They are produced in countries where the historic, socio-economic and cultural settings communicate anxieties in this format. By examining this study we have shown that by contextualizing these 'rumours', the concerns they express can be constructively addressed and in turn result in the successful conduct of research aims

Navigating uncertainties of death: Minimally Invasive Autopsy Technology in global health

Global health practitioners and policymakers have become increasingly vocal about the complex challenges of identifying and quantifying the causes of death of the world’s poorest people. To address this cause-of-death uncertainty and to minimise longstanding sensitivities about full autopsies, the Bill and Melinda Gates Foundation have been one of the foremost advocates of minimally invasive autopsy technology (MIA). MIA involves using biopsy needles to collect samples from key organs and body fluids; as such, it is touted as potentially more acceptable and less invasive than a complete autopsy, which requires opening the cadaver. In addition, MIA is considered a good means of collecting accurate bodily samples and can provide the crucial information needed to address cause-of-death uncertainty. In this paper, we employ qualitative data to demonstrate that while MIA technology has been introduced as a solution to the enduring cause-of-death uncertainty, the development and deployment of technologies such as these always constitute interventions in complex social and moral worlds; in this respect, they are both the solutions to and the causes of new kinds of uncertainties. We deconstruct the ways in which those new dimensions of uncertainty operate at different levels in the global health context